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Old 05-01-2011, 06:46 AM   #1
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Just Diagnosed - Gleason 8

I'm 53 years old and although this isn't a club I ever wanted to join (as I'm sure no one has) I was diagnosed on Friday with Prostate Cancer and three of the total twelve biopsies on the left side of the prostate reavealed a Gleason 8, others a 7. I really don't know much yet (and haven't wanted to) but I guess it's time to start learning. I guess a Gleason 8 is kind of bad. I'm set up for a bone scan this Friday if my insurance approves it by then. Logic tells me to get this cut out ASAP but the insurance takes 5-7 days for every approval. I don't know how critical timing is, but with an 8 I'm feeling the sooner the better. Then I just read about a waiting time between biopsy and surgery. My Dr. never mentioned that...he was ready to do it Monday until the insurance slowed it down. Should I be concerned about that? I suppose if I have a positive bone scan I'll be screwed either way but I'll crosss that bridge if and when I come to it. As I said, I'm new to all this..and still in shock. My PSA was only a 3.5 so it surprised the Dr. too. He though it would be negative or at least a wimpy cancer but according to him an 8 isn't wimpy. He can't do robotic because I had a sigmoidectomy last year and said too much scar tissue,etc so open surgery is the plan. Do you think I'm jumping the gun on deciding to go the surgical route so quickly? Is there other stuff I should know before making that decision?He said he couldn't spare the nerves on the left side where the cancer is but can on the right leaving me a 40% chance of ever being functional, if you know what I mean. Sex life may be a thing of the past and he said I need to get my head around the fact that I will never be the same. To go at this with a roll with the punches attitude...don't fight it, just go with the flow. I know there's a lot of educating to be done and I am dreading what I'm about to face. I guess I want to know how bad is this going to be? I hear I have to have a catheter in for two weeks following surgery and taking it out can be the worst part, then wear an adult diaper for two months...and then maybe be continent. I hate to sound like a such a wimp but this absolutely sucks. I guess the more I know the better I can prepare so any advice is appreciated. Thanks and sorry for such a long, whiny first post. I guess I'm just a little freaked out.

Last edited by rcroller; 05-01-2011 at 09:19 AM.

 
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Old 05-01-2011, 01:08 PM   #2
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Re: Just Diagnosed - Gleason 8

Hi rcroller,

Welcome to this board that none of us wanted to have anything to do with! You are reacting like I did - get it out fast! Surgery may turn out to be the best course, but there are other options that could be superior, and it is very important to follow the sequence Ready, Take Careful Aim, Fire, rather than Fire, then take Aim. (Fortunately, with my high-risk case and a fine medical institution handling my request, I was rejected for surgery. I'll insert a few points in green and expect to add more later.


Quote:
Originally Posted by rcroller View Post
I'm 53 years old and although this isn't a club I ever wanted to join (as I'm sure no one has) I was diagnosed on Friday with Prostate Cancer and three of the total twelve biopsies on the left side of the prostate reavealed a Gleason 8, others a 7.
I cannot overestimate the importance of having the pathology samples analyzed by an expert in prostate cancer pathology. Many of us have our first reading down by a general pathologist, and they frequently get the Gleason off a bit, more often underestimating it, but also overestimating it. A couple of outstanding books with information about this are "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano, 2005, and "Invasion of the Prostate Snatchers," by Ralph Blum and Dr. Mark Scholz, MD. The latter is especially good on helping patients decide which therapy would be best for them.
Quote:
I really don't know much yet (and haven't wanted to) but I guess it's time to start learning. I guess a Gleason 8 is kind of bad. I'm set up for a bone scan this Friday if my insurance approves it by then.
It will probably be covered because of the Gleason 8, but it is almost certain to be negative. Bone and CT scans are no longer recommended for lower-risk patients but are reasonable for Gleason 8 and higher PSA patients.

Quote:
Logic tells me to get this cut out ASAP but the insurance takes 5-7 days for every approval. I don't know how critical timing is, but with an 8 I'm feeling the sooner the better. Then I just read about a waiting time between biopsy and surgery. My Dr. never mentioned that...he was ready to do it Monday until the insurance slowed it down. Should I be concerned about that?
You are rushing. You should at least get a consultation with a radiation oncologist who is completely independent of your current surgeon and not recommended by him! (Otherwise, there is a strong likelihood that you will not get an objective consultation, unfortunately. A local support group, such as one of the many chapters of Us Too International, can probably provide some good leads.

Quote:
I suppose if I have a positive bone scan I'll be screwed either way but I'll crosss that bridge if and when I come to it. As I said, I'm new to all this..and still in shock. My PSA was only a 3.5 so it surprised the Dr. too. He though it would be negative or at least a wimpy cancer but according to him an 8 isn't wimpy.
Many higher Gleason prostate cancers produce relatively less PSA because the cells are so broken down.

Quote:
He can't do robotic because I had a sigmoidectomy last year and said too much scar tissue,etc so open surgery is the plan.
That might be an issue for radiation too, but it would be wise to consult with a good radiation oncologist about the potential of radiation for you. Radioactive seeds, placed only within the prostate, might solve the sigmoidectomy issue.

Quote:
Do you think I'm jumping the gun on deciding to go the surgical route so quickly?
A definite yes to that!

Quote:
Is there other stuff I should know before making that decision?...
I am absolutely convinced that it's very important for patients with challenging cases, as yours may be, need to become empowered. The two books above would be an outstanding start.

Take care,

Jim

 
Old 05-01-2011, 06:18 PM   #3
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Re: Just Diagnosed - Gleason 8

Thanks, Jim for the information. I appreciate your cogent advice. I'm going to call my GP tomorrow to get an appointment to discuss all this with him, who I do trust. The Urologist's office is supposed to call tomorrow with a surgery date so that may be my opportunity to slow this train down a bit. Thanks again for your input. I do appreciate it.
-Bob R.

 
Old 05-02-2011, 10:04 AM   #4
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Re: Just Diagnosed - Gleason 8

You're welcome rcroller. You might also want to check publications (resources, papers) from PCRI (the Prostate Cancer Research Institute), a non-profit organization.

Take care,

Jim

 
Old 05-03-2011, 07:42 AM   #5
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Re: Just Diagnosed - Gleason 8

Hi rcroller,

Like you, I was diagnosed with a Gleason 8 pc in 2005. My psa count was only 4.1 but as Jim said, a high grade pc can produce little psa because the cells are so disorganized. My urologist said, as yours did, a G8 is not a good thing. I discussed different options with him ( he gave me a book to read about the different ways to treat pc ) and I decided to go with the surgery simply because I wanted to get the damned thing out of there.

For almost 3 years after the surgery, my psa was undetectable and then it returned. My next option was radiation which I finished 2 years ago. So far my psa count is still undetectable but because my cancer is a G8, I expect it will return in the future.

There is another fellow that frequents this site that also has a G8 and after his surgery, he went 5 years before it returned. He had radiation after that and lasted for another 5 years before it came back again. He is on hormone therapy now but unfortunately that is not a cure for prostate cancer, but does prolong life.

If I would have had a good family doctor, I would have caught this thing before it developed into a G8 and, according to my urologist, there would have different methods of treatment available for me. Incidentally, 80% of prostate cancer victims are in the Gleason 5,6, or 7 category. Only 10% are in the Gleason 8-10 and the other 10% are less than G5.

Whatever you decide to do, I hope it works out well for you and you live a long life.

Lionel

 
Old 05-03-2011, 09:58 AM   #6
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Re: Just Diagnosed - Gleason 8

Hi again rcroller,

I just read Lionel's post to you, and it led me to think of the board's search options. You might want to try plugging in "Gleason 8" under the board's Google Custom Search option. I just did that and got leads to ten areas.

Take care,

Jim

 
Old 05-04-2011, 01:42 AM   #7
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Re: Just Diagnosed - Gleason 8

There is a clinical trial going on now at MD Anderson in Texas that you might want to take advantage of. They are looking for men with Gleason 8 or more who have not yet had a prostatectomy. They will give one shot of Lupron, and later two shots of ipilimumab, and then will perform a prostatectomy. This is a Phase II trial so you will get the full treatment (There is no placebo or other control).

The advantage of this for you are that:
  1. Lupron before RP (this is called neoadjuvant hormone treatment) has been shown to have better results than RP alone in men with aggressive disease.
  2. Ipilimumab, which has just been approved for melanoma, is probably the best new anti-prostate cancer drug in the arsenal. It works by activating an immune response that targets the cancer cells only. The price is around $30,000 a shot, so if you can get it free on a clinical trial, that would be an amazing savings.

I hope it's not the case for you, but as you know, RP for Gleason 8 is typically the start of several treatments that may involve radiation and hormone therapy. It would be great if you could circumvent all that with a few shots prior to treatment.

Below is the link to details about the clinical trial, giving contact details. I don't know if your sigmoidectomy would exclude you, but I think it's worth a shot. Ask about the costs. Usually they pay for the drugs and you pay for the rest, but since Bristol-Myers Squibb is sponsoring it, and they have deep pockets, they may pay for more, since this would involve 4 round trips to Houston for you.

http://clinicaltrials.gov/ct2/show/NCT01194271

- Allen

 
Old 05-17-2011, 12:58 PM   #8
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Re: Just Diagnosed - Gleason 8

Well, it has been a couple of weeks since my diagnosis. Alot has happened in that time; I've done my homework, made my Tx decisions, and am scheduled for an Open RP tomorrow morning at 8:30. The trial above would have been nice but I have really crappy insurance and it is very limited in terms of the available network. Something like that just wouldn't realistically work and that is a reality I must contend with. I am greatful that I have insurance as many are not so fortunate. I do; however, feel as though I'm in good hands. My Surgeon has done hundreds of these and I'm as ready as I'll ever be. I'm not one to waste time, and especially as a G8. The prep today wasn't much fun but no big deal really. My attitude has gone from grim to positive over the past two weeks and I feel like I'm ready for whatever lies ahead. So, the tough decisions have been made and now I can kick back and let the experts do their thing. I hope to be out of the hospital as soon as Friday and will let you know how things went from the other side(recovery that is). Best to all,
-Bob

Last edited by rcroller; 05-17-2011 at 01:03 PM.

 
Old 05-19-2011, 08:23 AM   #9
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Re: Just Diagnosed - Gleason 8

Good luck and God Bless Rcroller. It's good you have confidence in your surgeon. They have to tell you the worst that can happen, and it's scary. Please keep us updated on your situation.

 
Old 05-26-2011, 06:06 PM   #10
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Re: Just Diagnosed - Gleason 8

Just to follow up I will have been home for a week tomorrow post surgery. It all went pretty well. The pathology report down graded my Gleason to a 7, 4+3. The JP Drain and Cath are scheduled to be removed next Wednesday so living to learn with tubes in me and spasms. Not a great time but could be worse. Post Op Pathology Report results as follows:
Specimen size: 48 grams
Portion involved by tumor: 7%,
Nodule 18mm, left posterior lateral lobe
Extraprostatic extension present in left lobe
Seminal vesicle invasion: Not identified
Margins: Tumor found in periprostatic tissue extending to within less than 0.1 mm of inked left margins; no glands identified directly at inked margins.
Lymph-Vascular invasion: Not identified
Perineural Invasion:Present; peri-prostatic soft tissue
Primary Tumor: pT3a
Regional lymph nodes: pN0 - 0/5 pelvic lymph nodes
Distant Metastasis: pM0
Additional findings: Nodular prostatic hyperplasia

So, not the best or the worst. Dr. says high risk for recurrence and will follow with PSA every three months. Hopeful that he got it all. As you can see the margin was negative but just barely(<0.1mm). Very close and glad I moved to treatment so quickly...just three weeks post biopsy. Much more time and margins would have been positive. Looking forward to getting the tubes out and getting on with the next phases of recovery.

Last edited by rcroller; 05-26-2011 at 06:10 PM.

 
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Old 05-26-2011, 09:16 PM   #11
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Re: Just Diagnosed - Gleason 8

Bob, which hospital did you use for your surgery?

 
Old 05-27-2011, 06:13 AM   #12
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Re: Just Diagnosed - Gleason 8

I was at Tallahassee Memorial Hospital-(TMH). I actually wanted to use the Regional Hospital which I used last year for my Sigmoidectomy but would have had to wait an additional month to get scheduled there and didn't want to wait. With the margin being so close I'm glad I went with TMH and honestly I thought the level of care I received at THM was better, although the physical surroundings not as nice. I was only in W-F so it was a short stay anyway.

 
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Old 05-27-2011, 07:35 PM   #13
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Re: Just Diagnosed - Gleason 8

The first thing you need to do is slow down and get yourself educated. Just because your doctor states what he thinks you should do does not mean that is the best course of treatment or what you might want to do. You are the person in charge of all health decisions and cancer is an important life changing one. First, make sure that you get second and maybe even third opinions on everything including your lab results. Heck, my husband had two biopsies just on the chance that the first one was read wrong which does happen. Next, explore all of the options that you have. We went to Vattikuti Institute for the robotic surgery and you could always talk with them about your situation to see if in fact it is true that you can't have robotic. I would think a skilled doctor could do it even though you've had the sigmoid surgery. Did the doctor say how he can already tell what nerves can be saved? Ours could not really tell until he got in there and he saved them all. Also, did you ask your doctor if this cancer has anything to do with your colon cancer? Might just be a coincidence but I would want to know. While I know it's hard, try not to worry yourself. Cancer loves things like stress, unhealthy lifestyles. So try to take care of yourself, eat right, exercise, get sleep and don't rush into anything. You don't want to do something and regret it later because you rushed into it. If the cancer has not spread, count your blessings and even if it has there is still treatment for that. Also, we had six months in between diagnosis and surgery so try not to worry. I'm happy to report that he is now cancer free! I hope you will experience the same outcome.

 
Old 05-27-2011, 09:10 PM   #14
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Thumbs up Re: Just Diagnosed - Gleason 8

I'm so glad your surgery went well, great news. I looked over your pathology reports and do not understand why you surgeon is so negative about the chances of it returning. My husband's pathology was very similar and was never told this by anyone. Also, I see that they were wrong on the Gleason. This is why I tell everyone to make sure they get their biopsies examined by a professional and get 2nd, 3rd opinions. Had you known this you might have been able to find a doctor to do it robotically. I've been very impressed by what the doctors and robotic instruments can do. Also, aren't most medical trials free? Best of luck in your recovery. I know cancer is a terrible disease and hopefully we will find a cure!!

Quote:
Originally Posted by rcroller View Post
Just to follow up I will have been home for a week tomorrow post surgery. It all went pretty well. The pathology report down graded my Gleason to a 7, 4+3. The JP Drain and Cath are scheduled to be removed next Wednesday so living to learn with tubes in me and spasms. Not a great time but could be worse. Post Op Pathology Report results as follows:
Specimen size: 48 grams
Portion involved by tumor: 7%,
Nodule 18mm, left posterior lateral lobe
Extraprostatic extension present in left lobe
Seminal vesicle invasion: Not identified
Margins: Tumor found in periprostatic tissue extending to within less than 0.1 mm of inked left margins; no glands identified directly at inked margins.
Lymph-Vascular invasion: Not identified
Perineural Invasion:Present; peri-prostatic soft tissue
Primary Tumor: pT3a
Regional lymph nodes: pN0 - 0/5 pelvic lymph nodes
Distant Metastasis: pM0
Additional findings: Nodular prostatic hyperplasia

So, not the best or the worst. Dr. says high risk for recurrence and will follow with PSA every three months. Hopeful that he got it all. As you can see the margin was negative but just barely(<0.1mm). Very close and glad I moved to treatment so quickly...just three weeks post biopsy. Much more time and margins would have been positive. Looking forward to getting the tubes out and getting on with the next phases of recovery.

 
Old 06-17-2011, 06:54 AM   #15
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Re: Just Diagnosed - Gleason 8

Just a quick update...had my four week post-op follow up yesterday and my PSA has now dropped to <0.1 which is as sensitive as the testing gets around here. They consider that "undetectable" and is as good as it gets, so good news and a good baseline...now just hoping it stays that way. Next Uro appt in 4 weeks and PSAs every three months for a while. Doc says if we hit a rise will bump the frequency to monthly testing but hope that isn't necessary.

 
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